The funding gap: why myeloma remains an overlooked cancer in the UK

One such condition that continues to fall through the cracks is myeloma, a rare and incurable blood cancer that affects around 5,900 people in the UK each year. Despite its significant impact on patients, families, and the NHS, myeloma research and treatment funding lags behind other cancers, raising concerns about equity, policy priorities, and patient outcomes.

Myeloma, which arises in the plasma cells of the bone marrow, is the third most common type of blood cancer in the UK. Yet, it receives considerably less funding than other malignancies such as breast, prostate, and lung cancer. While survival rates for many cancers have improved dramatically over the past decade due to increased investment in research and treatment, myeloma remains difficult to treat, with an average survival rate of only five to seven years post-diagnosis.

The UK government, through the National Institute for Health and Care Research (NIHR) and other bodies, allocates substantial funding for cancer research. However, allocation is often determined by prevalence and political influence rather than disease severity and patient need. While it is undeniable that high-incidence cancers warrant significant funding, the stark disparity in funding per patient raises ethical and practical concerns.

For example, breast cancer research received approximately £60 million in 2023, while prostate cancer secured around £35 million. In comparison, myeloma research funding barely surpassed £6 million. Given that myeloma remains incurable and has a high mortality rate, this discrepancy highlights an imbalance in resource allocation that could have serious implications for future treatment development.

Behind the statistics are real patients with families whose lives are profoundly affected by myeloma. Many struggle with delayed diagnoses due to a lack of awareness among GPs, limited treatment options, and the financial and emotional toll of living with a chronic and ultimately terminal disease.

Marion Sauvebois from Myeloma UK said “Around a third of people with myeloma are diagnosed through A&E. By that point, many of them are experiencing severe or life-threatening symptoms.

“Half of patients face a wait of over five months to receive the right diagnosis. A third of myeloma patients visit their GP at least three times before getting a diagnosis.”

She went on to say: “Myeloma UK is the only UK charity dedicated to providing support and influencing access to treatments, whilst researching a cure.

“We do not receive any government or NHS funding and rely entirely on voluntary donation.”

The lack of investment in myeloma research not only affects survival rates, but also impacts the quality of life for patients. Many rely on a cycle of treatments that include chemotherapy, stem cell transplants, and emerging immunotherapies, but without sufficient research funding, progress in developing less toxic and more effective treatments remains slow.

Patient advocacy groups (including Myeloma UK and Blood Cancer UK) have been vocal in their calls for increased government funding. They argue that the UK Government must rethink its funding strategy to ensure a more equitable distribution of resources based on disease burden and need rather than prevalence alone.

Liz Mace, 54, raised around £3,000 for Myeloma UK after completing a skydive last year, following her husband’s diagnosis of the disease in 2023.

“When my husband was diagnosed, I felt helpless. Raising money for Myeloma UK was my way of fighting back and ensuring more research is done to help future patients.”

She continued: “jumping out of a plane was terrifying, but nothing compared to the fear and uncertainty myeloma patients face everyday. We need more funding to give families like ours hope.

“Myeloma is often overlooked, but it affects so many lives. It is frustrating to see millions poured into other cancers while myeloma remains underfunded.

“The government needs to recognise that every cancer patient deserves an equal chance at survival.”

The UK Government has pledged to improve cancer outcomes through its 10-Year Cancer Plan, but without a specific strategy for underfunded cancers like myeloma, progress will remain uneven. In 2023, the government allocated an additional £50 million for cancer research, but it remains unclear how much will directly benefit myeloma.

Policymakers must recognise that investing in myeloma research is not just a moral imperative but also an economic one; better treatments would reduce hospitalisations and long-term NHS costs, ultimately benefiting the entire healthcare system. Expanding public awareness campaigns, increasing funding for early detection programs, and prioritising equity in research allocation are all necessary steps in ensuring that myeloma patients receive the same level of attention and care as those with more widely recognised cancers.

For the thousands of people living with this devastating disease, the funding gap is not just a policy issue. It is a matter of life and death.